PACE trial and other clinical data sharing: patient privacy concerns and parasite paranoia – For Better Science

"Data sharing is all over academic news now. We had Research Parasites, a noxious species of scientists who want to analyse others’ published data without granting its 'owners' co-authorships and a certain control over the interpretations. Then there is a major battle between patients and clinicians about the release of the original data from the so-called PACE trial, originally published in The Lancet, which analysed medical efficiency and economic costs of different therapies for chronic fatigue syndrome/ myalgic encephalomyelitis (CFS/ME). Since the PACE study came out in 2011, the patients, but also a number of academic scientists, remained unconvinced of the published therapy recommendations and suspected a misinterpretation of data. The authors felt harassed and even threatened by the patients’ incessant demands. The relevant research institutions, the Queen Mary University London and the King’s College London, took the side of their clinicians and refused the release of data, using as argument the allegedly inappropriate nature of such requests and the privacy rights of trial participants ..."